Early Planning Helps Ease Transition From Pediatric to Adult Epilepsy Care

WASHINGTON, DC—Transitioning pediatric epilepsy patients to receive care in the adult system can be a daunting task, said Rebecca J. Schultz, PhD, RN, CPNP, at the 71st Annual Meeting of the American Epilepsy Society. A gradual shift in responsibility from the healthcare provider to the parent or caregiver to the adolescent is recommended. “The transition requires careful planning that must be patient-centered, comprehensive, and uninterrupted,” Dr. Schultz said. “The process should begin early, at around age 12.” Dr. Schultz is an Assistant Professor of Pediatric Neurology and Developmental Medicine at Baylor College of Medicine and Principal Nurse Practitioner in the Comprehensive Epilepsy Program and the Blue Bird Circle Rett Center at Texas Children’s Hospital in Houston.

Rebecca J. Schultz, PhD, RN, CPNP

Considerations for an Individualized Plan

Youth with epilepsy persisting into adulthood form a complex and diverse group. A transition plan should be based on the patient’s epilepsy type and severity, Dr. Schultz said. Childhood epilepsy persisting into adulthood can have one of three broad outcomes. The first group of patients has well-controlled seizures and is of normal intellect. The second group is patients who have seizures that remit in childhood, but have social comorbidities that persist into adulthood. “The third group is those with refractory epilepsy who continue to have seizures and comorbidities as adults,” she said. Intellectual disabilities are common in epilepsy, affecting at least 20% of children, she added. In addition, many psychosocial issues may have a greater impact than seizures on social outcome. Each patient requires an individualized transition care plan.

“Patients who have well-controlled epilepsy and are of normal intellect need to learn self-management skills—how to take their medicines by themselves without prompting, how to call in for a refill, and how to recognize when they should seek help for a medical emergency.” In addition, they need to know about the teratogenicity of the antiepileptic drugs (AEDs) that they are taking, as well as the impact of alcohol and substance abuse on their epilepsy and their medications. Other factors that should be addressed include driving eligibility and contraception.

Patients with refractory epilepsy and intellectual disabilities often have complex health needs and require multidisciplinary care, including occupational therapy, physical therapy, and other specialty services. Patients with intellectual disabilities may be able to attain some, but perhaps not all, self-management skills, Dr. Schultz said.

Treatment Concerns

With regard to treatment, some AEDs used in pediatrics are rarely used by adults. “The questions for transition are: which drugs are effective in adults, what is the optimal dosage, and what are the drug–drug interactions?” Dr. Schultz said. “Another treatment challenge is the overall lack of availability of ketogenic diet programs for adults. We need to think about developing more such programs, since research has shown that transfer to an adult ketogenic diet program results in continued adherence to the diet.”

Finding a neurologist who feels confident in caring for a youth with complex epilepsy also can be a challenge; therefore, it may be helpful to identify an adult provider a year before making the transfer, Dr. Schultz said. In a survey of adult and pediatric neurologists, only 11.2% of adult neurologists felt confident in caring for youth with epileptic encephalopathies, and 9.8% felt confident caring for those with epilepsies with genetic syndromes. This finding highlights the need for good communication between pediatric and adult providers. “The more information those of us on the pediatric side can provide to the adult team [the better]the chance of a satisfactory transition,” she noted.

Steps for Transition

“It is important for healthcare providers to let parents know that the current relationship has an end date,” Dr. Schultz said. “Starting transition at around 12 years and no later than approximately 16 years gives parents time to prepare and gives adolescents time to increase their competence, if they have the capability.”

In 2016, the Child Neurology Foundation developed principles for transition of care in epilepsy for neurologists (www.childneurologyfoundation.org/transitions). Among the foundation’s resources is a checklist that can help youth and their families determine where they stand, what they have accomplished, and what they still need to learn. “It includes such items as ‘I know what my medications are and what they are for’ and ‘I know what I’m allergic to,’ with columns for ‘Yes, I know this,’ ‘I still need to learn that,’ and ‘I still need help,’” said Dr. Schultz. “It is recommended that a readiness assessment be made on an annual basis.” The Ontario Implementation Task Force published steps for the transition process in 2017.

“The expectation is that transition be a shared responsibility among team members and not the sole responsibility of the neurology provider,” Dr. Schultz noted. Other tools include the Transition Readiness Assessment Questionnaire (www.etsu.edu/com/pediatrics/traq/) and the MyHealth Passport (www.sickkids.ca/Good2Go/for-health-care-providers/Transition-Tools-and-Supports/).

It has been suggested that epilepsy diagnosis be reevaluated between ages 16 and 19 by repeating EEG and neuroimaging. Also, clinicians should think about updating genetic testing. “Many of these adolescents have not had these tests performed since infancy or early childhood, and many new tests have been developed over the past few years,” Dr. Schultz said. “Finding a genetic cause for epilepsy can lead to customized treatment and a dramatic improvement in seizure control. It might end the diagnostic odyssey in some of these patients, thereby improving their quality of life.”

—Adriene Marshall

Suggested Reading

Andrade DM, Bassett AS, Bercovici E, et al. Epilepsy: transition from pediatric to adult care. Recommendations of the Ontario Epilepsy Implementation Task Force. Epilepsia. 2017;58(9):1502-1517.

Borlot F, Tellez-Zenteno JF, Allen A, et al. Epilepsy transition: challenges of caring for adults with childhood-onset seizures. Epilepsia. 2014;55(10):1659-1666.

Brown LW, Camfield P, Capers M, et al. The neurologist’s role in supporting transition to adult health care: a consensus statement. Neurology. 2016;87(8):835-840.

Nabbout R, Camfield CS, Andrade DM, et al. Treatment issues for children with epilepsy transitioning to adult care. Epilepsy Behav. 2017;69:153-160.